I will be walking 30miles throughout march to help raise funds for Charlie to go to therapies like smile therapy in Canada to help manage Charlie’s condition.

Charlie was only diagnosed with Lesch Nyhan Syndrome 3 years ago. It is a genetic condition which is degenerative and life limiting. This condition means Charlies suffers from dystonia (muscle spasms) which can be very painful and hypotonia (low muscle tone/floppiness). His condition also affects his kidneys and he requires at least 2 litres of water per day to help keep them working well. He is non verbal but fully understands everything going on around him. Charlie is unable to sit unaided or walk and requires a wheelchair full time. He has an NG tube and requires this due to his condition to get the large volume of water in as well as his milk. Charlie’s mum and dad As parents were heartbroken to learn about Charlie's diagnosis but we just need to keep trying to help him and give Charlie the best life going forward.

I have known Charlie, his little brother, mum and dad for two years now and Charlie is the most sweetest happiest boys with a great sense of humour you will ever met! Some days my daughter Lily who is 18months old will be joining doing some walking and in the pram.

Just4Children are raising funds to give Charlie the support he needs to access therapies and specialist equipment to lead as full a life as possible.